Laser beams update
16 January 2025
We arrived safely in Florida and Ashy has started Proton Therapy (laser beams). We are 6 treatments down and 24 to go. He has been amazing at tolerating the treatment, avoiding needing a GA each day which is amazing. He has been inspiring facing fears and focusing on ways to have fun each day. "I think the purpose of life is to have fun" - one of his actual pearls 🥰.
There are other kids here from Aussie with very similar stories regarding difficult access to funding (i.e. due to slow processes and red tape not due to need), requiring them to have to self-fund/community fund this treatment aswell. They point out that the budget is there and accounted for and that this all should technically be funded by our collective taxes. They are being vocal about this issue and we will rally behind them too, as we believe every kid with brain cancer deserves access to this treatment. Not just those who can front up the cost or that have the support we have had from friends and family to help. We will also be petitioning for a proton machine to be built in Australia in collaboration with New Zealand to offer a streamlined service for Kiwi's and Pacific Islanders. It is false economy to not have this option considering the long term effects of our current treatment options.
As hard as this road has and will be, we hope Ashyr's suffering will not be for nothing and that some good can come from this journey for other kids.
Aroha nui to you all. We feel your love and support each day. 💚
